Hopes and Dreams

(Content warning: Mentions of domestic abuse and suicide)


During his Tory party conference speech last week, Rishi Sunak, while justifying slashing Universal Credit, asked his audience “is the answer to their hopes and dreams just to increase their benefits?”

The thing is, for many people; the answer is a simple “yes;” an increase in benefits could be an answer to their hopes and dreams.

* If a parent’s dream is for their kids to have a better life than them, and increased benefits mean they’ll be able to work only one job rather than the three they have now, giving them time to help their children with homework, which will enable their children to achieve more later in life: Yes, increased benefits can answer their hopes and dreams.

* If a terminally ill person’s dream is to go on an exciting adventure before they die: Yes, increasing their benefits can be the answer to their hopes and dreams.

* If a person with a mobility impairment dreams of a really good wheelchair that’ll change their life, but the NHS won’t prescribe what they need and they’re not popular enough to crowdfund it: Yes, increasing their benefits can answer their hopes and dreams.

* If a disabled person wants to move into a more accessible property, which will dramatically improve their health, but they can’t find one within the local housing allowance budget: Yes, increasing their benefits can answer their hopes and dreams.

* If a disabled person was saving up for something special, but they blew their savings on the extra costs of being disabled/shielding in a pandemic: Yes, increasing their benefits can answer their hopes and dreams.

PIP is supposed to cover the extra costs of being disabled, but despite the fact that so many of us saw our extra costs soar during the pandemic - from having to have everything delivered costing more than being able to go to the shops while shielding, to having to turn to more expensive things like robot vacuums and having to get takeaway every day when social care was withdrawn - we got no extra PIP payments to cover those extra costs. I calculated that my extra costs related to shielding from March 2020 to March 2021 came to £5,000. I won’t say I could “afford” that, because it’s not true; but I did have access to that amount thanks to family, while not all disabled people did. At least one disabled person starved to death during the first lockdown because he couldn’t access food while many other disabled people will have gone cold, hungry, or without connectivity due to not being able to afford phone credit because their extra costs were not met. There were no campaigns to get a one-off payment to PIP claimants to cover our pandemic extra costs, because no political party actually cares enough to fight for us; and the major disability charities aren’t any better, because they didn’t demand that PIP meet our pandemic-related extra costs either.

And if you have more than £16k in the bank, you’re not eligible for any income based benefits, you can only claim £74.70/£114.10 weekly contributions based ESA (as long as you’ve been paying your National Insurance contributions in the last couple of years), plus PIP. I’ve a good friend who got an inheritance a month before the pandemic. Not huge, but enough to buy a crap house in some of the most deprived areas of the north. But her income based benefits were cut because she did the right thing and told the DWP she’d gotten the inheritance, so during the pandemic she’s had to live off that inheritance because she was paying £107 rent a week out of £114 ESA; leaving her with £7 a week to live off, plus PIP to cover some of her extra costs of being disabled. Obviously £7 a week for all bills is not survivable, so she’s had to dip into the inheritance; and now it looks like she’ll be renting for the rest of her life between the inheritance she blew on surviving while shielding, and the soar in house prices caused by the stamp duty cut. Her only hope to buy a crap house in a deprived area in the north now is if there’s a housing crash this winter.

Most political parties at various points in time bang on and on about how the system should look after those who’ve ‘done the right thing’ and worked hard and paid their National Insurance. But they don’t at all. Having £7 a week to live on after you’ve paid your rent is not “looked after”. Those who’ve paid their NI but aren’t eligible for income based benefits because they’ve got a partner in work, or got more than £16k from an inheritance or old savings from when they were fit for work, are treated like shit. And because of that, the benefits system will pay more in the end. My friend won’t be able to buy a house now, so she’ll deplete the small inheritance, and then will soon be back on income based benefits again and the state will need to pay her rent again. If contributions based benefits were fair, she wouldn’t have blown out her inheritance while shielding, she’d be able to buy a cheap house once she’s had her third jab and finished shielding, and the state would never need to help her with rent ever again.

She - like claimants of all legacy benefits like JobSeekers Allowance, Carer’s Allowance, and all types of ESA (both contributions and income based) - didn’t even get the extra £20 a week that UC claimants got. When you’re left with £7 a week after paying rent, that extra £20 would triple the amount available to spend before having to buy food out of the money she was hoping to buy a future with. The #20MoreForAll campaign was pretty pitiful to be honest because it had no mainstream support; the main political parties barely made a peep - Labour just had the very occasional tweet from the Shadow Work & Pensions Secretary - and the charities that are supposed to represent us barely made a fuss either. I suppose at least they did more for that than they did for trying to get a one-off PIP payment to cover our pandemic extra costs; with the amount of effort there being absolute zero, they’ve never mentioned it at all.

(Friend consented to being written about anonymously)

* If a parent is worried about their children being at risk of getting involved in a gang, and dreams of moving to a new city to give their kids a fresh start, but they can’t afford a moving van, a deposit on a new private rented flat, or even to pass the financial check landlords carry out: Yes, increasing their benefits can answer their hopes and dreams.

* If a person with limited mobility simply dreams of surviving this winter without dying of hypothermia, and wishes they could afford to put the heating on: Yes, increasing their benefits can answer their hopes and dreams.

Disabled people born after 26th September 1955 aren’t eligible for the non-means tested Winter Fuel Payments and despite the fact that fuel bills are higher than ever, disabled people are having to spend more time at home than ever before because many of us are still at least semi-shielding, and most importantly; many of us can’t move around to keep warm like non-disabled people who can do star jumps to warm up: There’s no campaign to introduce WFPs for disabled people in this most expensive winter ever. Again, neither politicians, nor charities that supposedly represent us, care about us going cold this winter. The WFP ranges from £100-£300 depending on age and circumstances. I’d say that £150 for those getting the low rate mobility component of DLA/PIP (who have some limitations with their ability to move around), and £300 for those getting the high rate mobility component of DLA/PIP (who have severe limitations with their ability to move around), would be suitable rates. But no-one cares if we fucking freeze, especially not those supposed to be representing us.

* If a person who recently became disabled can no longer do their old job, and they need money to pay the course fees to retrain do something different: Yes, increasing their benefits can answer their hopes and dreams.

While you can get some qualifications funded by the JobCentre if you meet certain conditions; there will always be people who want/need to train on a course that isn’t funded, or they don’t meet the criteria for funding.

* If a homeowner is off work sick long term with Long Covid, and they dream of keeping the family home, perhaps the home where their children grew up, maybe the house where their spouse died, but they can’t afford the mortgage on ESA or Universal Credit: Yes, increasing their benefits can answer their hopes and dreams.

* If someone permanently too ill to work dreams of being a homeowner: Yes, increasing their benefits can answer their hopes and dreams.

You can claim housing benefits to pay your landlord’s mortgage, but not your own. The only help for homeowners with housing costs is Support for Mortgage Interest; and even that’s a loan nowadays. So you’d have to find the money for your mortgage, and all the other expenses in life, out of your £74.70/£114.10 weekly contributions based ESA, or £324.84-£668.47 monthly Universal Credit. (Some people are still getting income based ESA, although you haven't been able to put in a new claim for ibESA since long before SARS-CoV2 made the jump to humans, so that won't apply to anyone newly claiming benefits due to long covid.)

* If a disabled person on income based benefits dreams of living with their partner, but can’t afford it because their benefits will be stopped completely leaving them wholly dependent on their other half: Yes, increasing their benefits can answer their hopes and dreams.

* If a disabled person dreams of leaving their abusive partner, then an increase to benefits that are paid directly to them - specifically PIP or contributions-based ESA, as distinct from Universal Credit which will be paid to the head of the household - could enable them to afford transport and a temporary place to stay in order to be able to leave; answering their hopes and dreams.

Disabled people are nearly three times as likely to experience domestic abuse as non-disabled people so needing to save up money that comes to you personally in order to leave is not a hypothetical risk for thousands. It's also why many disabled people daren't move in with a partner they'd be wholly dependent on because it would put them at such high risk of financial abuse, and potentially other kinds too. You never know what the wonderful, kind, gentle person you love right now will turn into when you're completely dependent on them just to buy tampons.

* If a disabled person simply dreams of not having to count every penny, of being able to spontaneously buy a new dress, of being able to get takeaway now and then, of being able to put the heating on more than 3 hours a day: Yes, increasing their benefits can answer their dreams.

* If a new computer could make someone employable, if they’re only well enough to work from home and a new PC could completely change their life, but they just can’t afford one: Yes, increasing their benefits can answer their hopes and dreams.

I don’t know if you noticed, but in several of these examples - the person who needs a new wheelchair, the person who needs a more accessible home, the person who needs to retrain, and the person who needs a new computer - an increase in benefits would ultimately make them more employable. The government thinks slashing benefits is the answer to getting disabled people back to work; but in reality the opposite is true. If you need a wheelchair to physically get yourself to work, but you can’t afford one, the NHS won’t issue a suitable one, you’re not eligible for Motability because you got turned down for high rate mobility PIP, and you’re not popular enough to crowdfund one: You literally cannot physically go into a job interview to try and get hired.

First Labour, then Tories and Lib Dems, then Tories on their own, then Tories and the DUP, and most recently Tories on their own again, have spent the last 13 years cutting disabled people’s benefits to try to get seriously ill and severely disabled people to get off their "lazy" sick and disabled arses, and into work. Never mind the fact that DLA was not an out of work benefit and plenty of claimants needed it to stay in employment; they still created PIP to try and cut the case load by 20%, spouting utter bollocks about getting disabled people into work.

But when you cut someone’s benefits, you drive them further from the workplace. If someone has a job that can’t be done from home, but their PIP is stopped so the Motability scheme takes back their leased wheelchair: Suddenly they cannot go into work, maybe cannot even get out of bed. They’ll at the very least need to take a sabbatical from work until they get a new wheelchair, they may even lose their job entirely.

You also drive them further from the workplace because poverty damages health, and we’re talking about people who are already sick. If someone has cancer but is hoping that claiming benefits is a short term thing because they’re hoping they’ll recover quickly; until they discover how little they’ll have to live on. You cannot recover from a serious illness like cancer if you’re malnourished from poor quality food, and borderline hypothermic because you can’t move much and you can’t afford to put the heat on, while the stress of poverty can also affect physical healing. A cannabis prescription may help with many facets of cancer with THC being an antiemetic, a painkiller, and an appetite stimulant, but cannabis prescriptions are pretty much only available privately; and you definitely won’t be able to afford private healthcare on £74.70 a week ESA (the amount you’ll get if you’re expected to be able to return to work in the not too distant future). Such claimants would have the chance to recover quicker and get back to work quicker if their benefits were enough that they could eat well, keep warm in winter and cool in summer, avoid having their physical healing slowed by the psychological stress caused by poverty, and afford a bit of private healthcare; whether a physio to help them get movement back after an op, or, yes; a doctor who issues private prescriptions for medical marijuana.

The stress of poverty affects even those who were the most mentally sound previously. So if you’re claiming benefits for a mental health condition, the chances you’ll be able to get off benefits is slim. But if our benefits system lifted ill and impaired people out of poverty, it would give people a real shot at recovering from a mental illness, instead of our social security system making people sicker. Especially if people could afford to pay for mental healthcare in a timely manner rather than waiting at least months, commonly years, often for the wrong therapy on the NHS.

If you just yank the social security rug out from under the feet of people claiming benefits due to severe mental illness, obviously they’re not well enough just get a job, so they end up dying like Errol Graham and Mark Wood who both starved to death because they couldn’t afford food, or they’ll die by suicide like Philippa Day, Paul Reekie, and far too many others to list. Reekie died only a month after Iain Duncan Smith succeeded Yvette Cooper as Work & Pensions secretary, so his death was as a result of the benefit cuts instituted by the last Labour government; before the Tories had the chance to make the system even worse. It's worth noting that in Australia, during the pandemic when social security payments temporarily rose and lifted people briefly out of poverty, suicides went down.

The government created the non-means tested furlough scheme to keep people's finances sound while they weren't in work, because they know full well that plunging people into poverty drives them further away from work by damaging their mental and physical health, and leaves them unable to afford the essentials to get back into work like a computer and smart clothing. But they don't apply the same logic to sick and disabled people. Somehow we're a magic mirror image of the non-disableds, and forcing us deeper into poverty will supernaturally drive us closer to work. Even though the list of DWP-related deaths tells a different story.

Yet despite all these obvious examples of how increased benefits could not only answer our hopes and dreams (and in some cases save our lives), but also achieve the government’s goal of making us more employable; Thérèse Coffey said at the Tory conference that she wants to cut even more people’s benefits “to get us into work” when, of course, all it’ll do is make people iller - therefore further from work, less able to afford to get healthy, and less able to buy the tools they need to find work like wheelchairs and computers - and will ultimately lead to even more preventable deaths at the hands of the DWP.

The main reason for planning more cuts, of course, is just because the Tories love levelling down, despite all the "levelling up" bollocks that riddled Johnson's conference speech. At the exact same time that the Universal Credit cut went into effect, plunging families into poverty, increasing hunger and suffering across the country; Thérèse Coffey was making sure everybody knew that she was loving it; she was having the time of her life.

.@George_Osborne plans another £25 billion in cuts, and wants to take around half of it from welfare

So I'd like to introduce Mr Osborne to few people:

Shaun Pilkington shot himself after his Employment and Support Allowance was stopped.

Tim Salter hanged himself after his benefits were stopped.

Victor Cuff also hanged himself after his sickness benefits were stopped.

Visually and mobility impaired Jacqueline Harris took an overdose in November after she failed the Work Capability Assessment in which she was only asked one question.

David Barr, who had mental health problems, took his life after his benefits were stopped. Posthumously the DWP admitted they were wrong and reinstated his award. Bit late...

There was the well-known case of Stephanie Bottrill who was unable to work due to Myasthenia gravis, and walked in front of a lorry because she couldn't afford the bedroom tax.

Nicholas Barker had been a farmer and was left hemiplegic after a stroke. He shot himself after his benefits were stopped.

Peter Hodgson was left unable to work after a brain haemorrhage and a stroke. He killed himself too.

Martin Rust was schizophrenic. His health had been improving until the DWP found him Fit For Work. The stress resulted in his suicide.

Craig Monk was an amputee with a history of depression and had taken overdoses in the past. He thought his benefits had been stopped and hanged himself.

Elaine Christian was so terrified of her Work Capability Assessment that the day before she slashed her wrists and took an overdose of co-codamol before drowning herself in a drain.

Paul Willcoxson was actually a JobSeeker, not someone claiming sickness benefits. He did, however, have a history of depression. He was so scared knowing benefit cuts were on the horizon that he killed himself.

Richard Sanderson was likewise a JobSeeker. He killed himself after his housing benefit was cut.

These are just the suicides, and these are just the people who've killed themselves due to benefit cuts since the coalition came to power. There were also the deaths of Paul Reekie and Leanne Chambers who killed themselves shortly before the coalition decided to expand on Labour's benefit cuts.

Then there were the people with conditions exacerbated by stress who died of natural causes because of the stress of benefit cuts.

Karen Sherlock had to spend the last months of her life using energy she didn't have fighting for the benefits she was entitled to. She was finally awarded them a few days before her heart gave out.

David Groves died of a massive heart attack the night before his Work Capability Assessment.

Brian McArdle had had several strokes. Despite this leaving him visually and mobility impaired; he was found Fit For Work. He collapsed in the street and died from a heart attack the next day.

Colin Traynor had epilepsy. He had a fatal seizure shortly after being found Fit For Work. His parents believe it was the stress that triggered the fatal seizure.

How much longer does Osborne want this list to be?

What's Wrong with Personal Independence Payments?

I put this together in my snail-like manner over Christmas, together with two other posts about the Welfare Reform Bill which is going to the vote in the House of Lords in the next few weeks. I mean these posts to be a basic primer for anyone who doesn't know what's going on with disability benefits in the UK. Tomorrow, Kaliya, Sue and others are publishing their research project on the way the government has handled the abolition of Disability Living Allowance, so it seemed a good moment to post my little summary.

Personal Independence Payments are set to replace Disability Living Allowance, a UK state benefit awarded to disabled people who need help getting around or looking after themselves. This benefit has nothing to do with whether or not someone is in work, and is not means-tested in any way. The current criteria are very strict, fraud is estimated at under 0.5% and legitimate claimants frequently have to go through a demoralising appeals process in order to get the benefit. Despite the public shock at Sue's recent rejection, I don't think I know anyone with a subjective condition (one dominated by pain, fatigue, weakness or mental symptoms) who has not been turned down at least once. In fifteen years, I have been turned down twice, appealing successfully both times.

The Government have made it clear that they wish to reduce the DLA caseload by 20%  in order to save money. There is no evidence, not a scrap, that anyone claiming DLA has more money than they need - check out the Where's the Benefit? Podcast for some examples of what this money is currently spent on. The Government have also frequently muddled the issues of Disability Living Allowance and incapacity-type benefits, speaking as if reducing the numbers on DLA equates with getting more disabled people into work. On the contrary, DLA is an essential benefit which enables many disabled people to stay in work.

The criteria for Personal Independence Payments [pdf] are not yet set in stone, but they are stricter than the already very narrow DLA criteria and there are some things which are quite clear. In May, Lisa read the draft criteria and found that she, as someone with congenital impairments and chronic illnesses which stop her working, walking more than a few steps and put her at ongoing risk of broken bones (she has broken her back rolling over in her sleep), would be entitled to nothing.

 The most significant changes are:

•  Someone who is able to propel their own wheelchair will be treated as if they have no trouble getting around at all, as if anywhere they might work, live in, shop or visit and any vehicles they travel in will be completely accessible. This is an absolute disaster for manual wheelchair-users.

• The need for ongoing supervision is not mentioned in the PIP draft criteria. Currently, DLA is awarded to people who need a great deal of supervision at home (e.g. to be around if they fit, fall or faint in dangerous cirumstances, to make sure they don't harm themselves or wander off etc). Quite obviously, if people don't have the supervision they need, they are going to run into serious trouble.

DLA is a gateway benefit. For example, if you are in receipt of the middle or higher rare Care Component of DLA, then a partner, friend or family member who is unable to work full time because of their caring responsibilities may be able to claim Carer's Allowance.  Receiving some rates of DLA can mean being exempt from VAT when you buy essential equipment.  If you are in receipt of the higher rate Mobility Component of DLA, you are automatically eligible for a Blue Badge. You can also use your benefit to rent a suitable adapted car through the Motobility Scheme (nobody gets a free car!).

The Blue Badge and Motobility Schemes subsidise disabled car-use for a very good reason. While many non-disabled people regard their cars and car use as essential, people with mobility impairments have absolutely no choice about needing to use a car, needing to park in busy or expensive car parks or directly outside the place they're going to, including their own homes.  Often we don't have any choice about the type of car we need, because we need adaptions or we need a large enough vehicle to carry paraphernalia like wheelchairs, scooters and so on. Many wheelchair-users will lose this help altogether.

These changes are going to lead to  

1. A major increase in unemployment among disabled people. 

Public Transport is not wheelchair accessible and even when it is, wheelchair-users frequently face discrimination. The move to PIP will mean that some employed wheelchair-users will lose their means of getting into work, if they are no longer eligible for the Motobility scheme and can't otherwise afford to run a car or take taxis everyday. Wheelchair-using job-seekers will have their chances of employment reduced even further, because they may not be able to travel further than they can roll.  Given that, as Emma points out, even our streets and pavements aren't yet fully wheelchair accessible, this may not be very far at all.

The changes to the Care Component will also effect people's ability to work in less obvious ways.


2. A major increase in hospital admissions, medical emergencies and preventable deaths among disabled people.

Last month, Lisa wrote a powerful post about the new PIP, describing how she wouldn't survive without the help she currently gets, and if she did, her quality of life would be so poor that it would not be worth going on with. If disabled people don't get the help we need to pay for support, appropriate equipment, transport and so on, then depending on our cirucmstances and personal priorities, then we will be forced to

•  Do much less. Go out less, have less social contact, quit our jobs, get less exercise, shop less, cook less, maybe eat less and certainly wash less. None of this is good for our physical or mental health. Our worlds will shrink and our health, happiness and life expectancy will adjust accordingly. 

or

• Try to manage without the appropriate support, equipment and so on. This could mean attempting to push beyond our limitations, until our bodies or minds give up and things start falling off. Where there is a need for supervision, managing without supervision is likely to prove extremely dangerous. The physical isolation involved in losing our cars or money to get around is far more dangerous because we are disabled. 

People spend their DLA on a whole variety of different things, as you can hear in the Where's the Benefit? Podcast. Some of those items are about quality of life, such as being able to leave the house, see friends and family and so on. But most of these things are about survival; eating, basic hygiene, getting appropriate rest and sleep, taking medication, attending medical appointments and so on.

Without this help, people will get sick, people will get hurt and some people will die.
  


3. A major increase in the social segregation of disabled people. 

Sometimes people remark that there seem to be far more visably disabled people about these days; wheelchair and scooter users, people with white canes or assistance dogs, people walking with sticks or crutches. And you know what? This is almost certainly true.

Some of us could only have survived infancy in the last three or four decades. Some of us wouldn't survive even day to day life without modern medicine. However, a huge number of us would have lived, but would have never been able to leave the house even twenty or thirty years ago. And then, even if we did, there would have been not much to do and not many places we could go.

As Mary says, disabled people are not dead. Most of us are capable of living full and enjoyable lives, if we get the help and accommodation we need. DLA has played an important part in that.

Disability Living Allowance has been a huge part of increasing equality for disabled people.  It has been our means of working around the problems of a disabling world, our means of, at least partially leveling the playing field and doing it ourselves - not relying on charities or government organisations to determine exactly what we need in the way of transport or help at home. Personal Independence Payments threaten this for a great number of people.

Not OK

Suicide and depression have been in the news a lot this week. First footballer Stan Collymore talked openly about his depression. This was followed a day later by news of the suicide of Wales football manager Gary Speed. Then that delightful chap Jeremy Clarkson "joked" on The One Show that trains shouldn't stop for jumpers.

Warning of possible triggers in discussion below the jump:

Cuts Kill. Again.

In the video above you hear the story of a couple and their fight of being caught up in a system where they could not get any benefits because the woman's learning disabilities were undiagnosed. Unable to get either JSA or disability benefits, they lived in one room, and walked 12 miles once a week to get free food from a food bank.

“The job centre decided Helen couldn’t sign on as she was incapable of employment, as she has no literacy and numeracy skills. However the incapacity people wouldn’t recognise her disabilities until she has been properly diagnosed, which led to month after month of seeing specialists, we’re in a catch 22 situation.

“We’re living hand to mouth.”

It has been reported today that the couple in the video above have been found dead in an apparent suicide pact. How many more people will die from these cuts before the government acts?

Another case of the human cost of benefit cuts

I've written before about the deaths of Paul Reekie and Christelle Pardo. But as right-wingers keep pointing out, those two both killed themselves before the cuts were rolled out. Of course most people can see that if people have killed themselves as a result of losing their benefits, even if it was before the austerity agenda, that it's a cautionary tale against attacking disabled people's meagre incomes.

But, still, there are some that assert that the suicides of Reekie and Pardo have no relevance to the cuts whatsoever.

Sadly the proof that cuts kill has arrived: 33 year old Paul Willcoxson who had mental health problems killed himself because he was so worried about benefit cuts.

A suicide letter and next of kin note were found in which he expressed concerns about Government cuts, Southampton Coroner’s Court heard.

Such a sad event. My thoughts go out to Willcoxson's friends and family.

Related: Someone wrote to DPAC explaining how difficulty claiming benefits was a factor in their sister's suicide.

Cuts and hate crime

The IPCC report into Leicestershire police's failing to tackle the disablist hate that resulted in Fiona Pilkington killing herself and her daughter Francecca Hardwick is to be released today.

Several news sources have written about this. The Guardian have this quote from Professor Alan Roulstone from Northumbria University:

"There's a whole series of problems stacking up. There will be other Pilkingtons, sadly."

Roulstone then goes on to explain:

"With the current cuts, hate crime is slipping down the agenda. It wouldn't be right to name police forces, but certainly more than one force has said to me they don't have the money for training updates. Police officers understanding disability is a challenge, and very few forces manage to roll out training which makes sense to officers at the ground level."

This article, along with all the others I've seen, acknowledge that police cuts will result in disablist hate crime not being handled appropriately, but what the articles don't mention is that the benefit cuts and surrounding rhetoric are fuelling an increase in disablist harassment.

Our own incurable hippie wrote about being followed down the street by a man shouting "fucking DLA stick" at her. Then this blogger wrote about being called a "scrounging cunt" in the street.

When it comes to hate the cuts are hitting us from every side. They're making us more likely to be subjected to harassment and it less likely for the authorities to take that persecution seriously. As for the subject of suicide, just have a flick through WtB and you'll see a significant percentage of posts have comments following them in which readers express their intention to kill themselves when they lose their benefits.

Suicide is part of the disability debate, because suicide is part of some disabled people's lives

This is a guest post from Zellieh, who can be found on twitter, and blogging here.

I'm writing this post because I'm so angry with this Guardian article, Suicide threats don't help disability debate, by Sharon Brennan:

I fear that the rhetoric used to draw attention to our community will close off the ears of the public. Threatening suicide is not just extreme, it sounds overtly engineered to make any discussion of disability benefit reform sound callous. Talking of increased pain, social isolation, inability to maintain a dignified life have a worthy place in the debate, but is it ethical to phrase the fight for benefits in the context of life or death?

Suicide isn't a political tactic for me, and you're lucky, dear readers and Guardian article authors, if you can look at the real risk of suicide among mentally ill disability benefits recipients and think of it as a tactical thing that other people do.

I don't know how much you know about claiming disability benefits on mental health grounds, but let me assure you that you don't get Disability Living Allowance, Incapacity Benefit or Employment Support Allowance for Mental Health issues because you're 'having a bit of a bad day' -- you need evidence, from a GP, a Psychiatrist, and a Community Psychiatric Nurse or Occupational Therapist, of serious long-lasting problems -- which often includes self-harm, suicidal thoughts, and/or actual suicide attempts.

The Department for Work and Pensions don't just hand over disability benefits because you ask nicely. The DWP & ATOS' medical assessments for benefits are designed for physical health problems, with mental health problems tacked on as a bit of an afterthought, so for someone who is mentally ill, they are the equivalent, in terms of stress, of passing a job interview or being made redundant, plus being threatened with moving house and/or having your house repossessed, since benefits link to Housing Benefit, so if you lose your disability benefits you can lose some or all of your Housing Benefit.

In your article, Ms. Brennan, you talk about

the talk of "potential" suicide

Thank you for using those patronisingly skeptical quotemarks around the issue of "potential" suicide. Or as I like to call it in my reality, suicide.

Suicide is not a tactic for me; it's a real risk: TWO of my four suicide attempts were triggered by the stress of medical assessments; one suicide attempt each for Disability Living Allowance and Incapacity Benefit.

I am genuinely happy for you, Ms. Brennan, if you manage to be both physically disabled and mentally well -- and I mean that sincerely; the world needs more happy, kick-ass people with disabilities leading full and varied lives, because disability ISN'T all about suffering and pain -- but I find your ignorance about people with mental health issues insulting.

Referring to a recent survey by Disability Alliance (which found that 9% of people who answered were considering suicide), you say,

I don't doubt that those who responded to the survey are genuinely in fear of losing the very support that makes their life bearable, but should they have been asked about suicide in the first place?

Well, considering that a third of people claim disability benefits due to mental health problems, and that many people with physical health problems are also often suffering form various mental illnesses or depressed due to the physical and emotional exhaustion that comes with living with disability, yes that is a valid question.

You go on to say,

Life is too precious to be used as an instrument to fight against government cuts and I can only hope that the very posing of the question hasn't led someone, already living in a climate of fear, to start down a very dark path of desperation.

Well, don't worry your passive-aggressive little head about that -- I was brought to suicide by the process of claiming disability benefits long before this survey came out, and in fact, I haven't even read it yet. Although, the current climate of fear has led me to think suicidal thoughts far more often; turning on the TV has become akin to playing Russian Roulette: will today's speech by [insert politician's name here] be the one that finally tips me over the edge?

Suicidal thoughts are a symptom of depression and also many of the anxiety disorders, eating disorders, and diseases such as dementia. Depression and anxiety often accompany physical health problems, for both disabled people and their carers (who are often invisible victims) due to stress and pain and grief and the severe limitations illness brings to peoples' lives.

Suicide is not a rhetorical device for me - it is a symptom of my illness. It is a symptom -- and a real risk -- of many peoples' illness. When you ask,

is it ethical to phrase the fight for benefits in the context of life or death?

I ask you -- is it ethical of you to ask me to lie about my life, my illness, my experience, because talk of my suicidal thoughts upsets you?

Absolutely Outrageous!

Or not...

I'm feeling quite sad this week that the general public, and more specifically anti-cuts campaigners, all consider books and trees to be far more important in the grand scheme of things than I - a human being - am.

Don't get me wrong, I'm a big fan of libraries and trees. As a child I always had my nose in a book. Always. And that was partly a disability-related thing: I couldn't run around or ride a bike, I spent a lot of time in bed with broken bones. Reading was something I could do and could do well. Very well. I could read books by myself before I started school and had a reading age far advanced of my chronological age.

The library was a huge part of my life. I couldn't possibly own all the books I read, if I did my mum and I would've had no room to move our wheelchairs around because there would just be piles of books everywhere. My local library used to have competitions in the summer holidays to see who could read the most books and it was genuinely gutting that I never won (I suspect the kids who beat me must've cheated and not read the books they claimed to have read).

Libraries don't just loan out books, they also loan CDs and DVDs. In the days before sites like Spotify allowed you to listen to an album before you bought it I'd often get CDs out of the library to try before buying. And obviously as a film geek I've taken hundreds of videos and DVDs out of the library. As a teenager I recall hunting high and low for a film I wanted to see that had been deleted on video and eventually stumbling across it on the World Cinema shelf of Cambridge's Central Library.

At this point it's almost impossible to live a life completely free from the internet. There are people who can't afford to have internet at home, or their computer broke and they can't afford to fix it, and so have to go to the library to access information that people reading this blog can probably find out sat in their pyjamas in their living room. And I think we've all experienced moving house and not being able to get the new broadband set up for a fortnight so we've had to go to the library in the interim period.

Then there's forests. I have to confess wandering around a forest of a Saturday afternoon doesn't hold much allure for me because such spaces are often not the most wheelchair accessible of places. But trees turn carbon dioxide into oxygen and I'm a big, big, fan of breathing. Certainly when I've had allergic reactions which have resulted in asthma attacks I've been quite distressed by not being able to breathe. So yay trees!

Despite my passion for libraries and my need for oxygen-producing trees I'm not sure I'd prioritise books and greenery over human lives. Yet that's what's currently happening in the anti-cuts movement. I want to make it absolutely clear that I do not support the closure of libraries or the sale of the forests. I am not suggesting that we close libraries and sell forests to save benefits. I am opposed to all the government's cuts.¹

Loss of benefits kills people. People like Paul Reekie and Christelle Pardo. A blogger called Aliquant has expressed her plan to kill herself if her transition from IB to ESA doesn't go smoothly. Here on WtB we've had plenty of people express their intention to kill themselves if they lose their benefits. Some of the examples are here and here.

I've written in the past on my own blog about how disabled people are seen as the lowest of the low, and that's still going on. Last week Melanie Phillips wrote a homophobic article in the Daily Mail. There was an outcry. Her name was a trending topic on Twitter and I must've read several hundred "gay agenda" jokes at her expense. As a lesbian I was among the horrified many (though part of me was looking forward to homosexuality becoming mandatory as she promised; I might get laid occasionally...) and shared in the collective outrage.

The following day the Mail published this article full of inaccuracies about the number of Incapacity Benefit claimants found fit for work. The outrage was limited to a tiny handful of disabled people. There were no trending topics and no jokes at the expense of Gerri Peev (the article's author) for being a disablist arse. In fact because there's been such prevalence of these misleading articles a lot of people of an anti-cuts bent probably believed it to be true rather than accepting the reality that it's just designed to incite hatred against disabled people. (In case you're wondering the fraud rate for Incapacity Benefit - according to the DWP's own figures - is 1%. See the table on page 8 of this report.)

The contrast in response to these two articles in the space of two days really made me feel like less of a human being because no-one's willing to speak out against this disablist prejudice. I speak out against racism, plenty of heterosexuals spoke out against Melanie Phillips' homophobia, but where were the non-disabled people speaking out against this disablist bile?

The issue is on my mind today because today there has been a national day of action to save libraries. It's been all over the news and twitter. That we as a culture value books more than disabled people is clear when you contrast today to the day of action against benefits cuts a fortnight ago.

457,500 people signed the save forests petition. Only 4000 and change have signed the save DLA petition. Really puts into perspective how much the general public prefers trees to disabled people.

I realise that most people support causes they understand. The campaign to save libraries will attract high-profile figures like authors because libraries introduce readers to their books. So famous people offer their endorsement to the "save libraries" campaign which has a top down effect; their fans become involved in saving libraries, which means there's enough people campaigning to get the story in the news, which means even more people campaign.

The same goes for forests. Most people off the telly will have enjoyed a walk through some trees with their dog at some point. So they tweet their support for the "save forests" campaign. Their fans then sign petitions and spread the word, which again results in newsworthyness so the campaign spreads like headlice in Downing Street.

Between health problems and discrimination limiting career options there aren't that many famous disabled people to set the snowball rolling down the hill. I explained in this post how we need non-disabled people to stand beside us and why it's important insurance for their own futures to do so. But still non-disabled people choose to prioritise libraries and trees over their fellow human beings whose lives are at risk from benefits cuts.

First They Came - Pastor Martin Niemöller

First they came for the Communists
And I did not speak out
Because I was not a Communist
Then they came for the Socialist
And I did not speak out
Because I was not a Socialist
Then they came for the trade unionists
And I did not speak out
Because I was not a trade unionist
Then they came for the Jews
And I did not speak out
Because I was not a Jew
Then they came for me
And there was no one left
To speak out for me

It'd make me happy beyond anything if this post could be seen as a 'call to arms' (not least because if the anti-benefits-cuts movement gained momentum it might save some lives), so please pass it on. Don't just dismiss me as a moaning scrounger but remember I could be your neighbour, your sister's friend, the customer in your café, the person you smile at on the bus every morning: We are real people being attacked by these cuts with no-one standing up for us.

"A call to arms? What do you expect me to do?" The Broken of Britain always have campaigns on the go that you can participate in from your desk. They've currently got details of several motions you can ask your MP/MSP/AM to sign. Disabled People Against Cuts (DPAC) are where to look for information on getting out in the streets and protesting. Then there's us: We'll always have news and intelligent comment to keep you informed, and if you follow us on Twitter you'll be kept up to date on all news, petitions, protests and motions around disability benefits issues.

I want some outrage, dammit!

---

¹ Retrospectively emboldened for emphasis because people were still accusing me of being in favour of closing libraries and selling forests to save benefits.

"Pregnant mother leaps to her death with five-month-old son in her arms after losing benefits" Daily Mail

Just a quick post because the woman in question was neither disabled nor claiming (or trying to claim) disability benefits, so the story isn't 100% on topic for us. But I think it's relevant enough to justify a short post because it further illustrates an issue I brought up before: The human cost of benefits cuts.

A pregnant woman jumped to her death while clutching her baby son after her benefits had been stopped, an inquest heard.

Read the full story on the Daily Mail website.

Edit: I should make clear that this is news from 9 months ago so not directly related to Osborne swinging his axe. I felt it was pertinent to WtB (which didn't exist 9 months ago) because it highlights what happens when people find themselves financially unable to go on living; because these cuts will put more people in that position.

The human cost of benefit cuts

I'd not heard of writer Paul Reekie until last month. But now, for me, he has come to represent the reason why Where's the Benefit? is needed and why these attacks on disabled people must stop.

The first time I'd heard of him was when I read this story in The Scotsman. The article contains this extract of a letter from Reekie's publisher Kevin Williamson to the Chancellor George Osborne:

"I thought I would let you know that Paul took his own life. He didn't leave a note but he laid out two letters on his table. One was notifying him that his housing benefit had been stopped. The other was notifying him that his incapacity benefit had been stopped.

"The reason I'm writing this letter is just so you know the human cost of attacking those on benefits."

"The letter will be binned and forgotten, but there will be loads more folk in Paul's shoes over the coming years trying to cope with unemployment, depression, house repossessions and stress."

Friends of Paul set up the Black Triangle - Anti-Defamation Campaign In Defence of Disabled Claimants on Facebook in memory of him. The 'info' page explains the name:

The Nazis forced people with mental and other disabilities to wear black triangles in the extermination camps during the Holocaust.

The generic classification they used was "Arbeitsscheu" - literally "Workshy".

Any loss of life is tragic. I hope that at least his death can serve as a wake up call to those attacking us that their actions do have very real consequences. Ultimately I would like to see Paul's death prevent any more disabled people being put in the economic position where they feel that death is their only option.